sister of mine – part one

Written in November 2010

Last minute Thanksgiving grocery shopping trips to Wal-Mart shouldn’t include a screaming twelve year old. She sits facing me in the shopping cart with elbows over her ears in the peculiar habit she’s had since her baby years. Her legs are too long to fit completely into the cart; they are pushed up against the half & half creamer, four cans of jelled cranberry sauce and graham cracker pie crusts. I watch in partial fascination, partial dread as she tilts her head back and screams out again. People begin avoiding us as much as it’s possible to avoid another human being in Wal-Mart on Thanksgiving eve. It’s a holiday, after all.

I scan the aisles. Maneuvering the bulky cart that weighs 95 more pounds than it should, I turn the corner and snatch a cracker box off the shelf. Mozzarella and sun-dried tomato, store brand. Who knows what kind of carbs are in this cardboard; it’ll probably send her blood sugar sky-high, but right now, I need her to be quiet. I’m beginning to envy her screams. It must be somewhat satisfying, sister of mine, airing your feelings out loud in the middle of the snacks aisle. At least people don’t give you annoyed looks—those are coming my way instead. Eat your crackers and just try to hold all that frustration and over-stimulation in until we get out to the car.

When we do reach the car, she immediately calms down. I start the engine and the slightly static sounds of Christmas fill the vehicle; 101.7 FM—the self-proclaimed 24/7 holiday music station. We pull out into traffic and I relax a little. We have fifteen minutes before home and the high pitched crying screams that are almost sure to ensue. Why, I wonder, is transitioning from place to place so difficult for my sister?

She was diagnosed with autism and other developmental delays when I was nine. Early intervention and therapy quickly followed. I sat at the pull-out desk and worked math problems while my three year old sister learned to walk behind a Fisher-Price push toy. Around and around the room she staggered, with the push toy in front and her therapist behind. Then came the preschool and kindergarten years, where she watched videos and made thanksgiving turkeys with her handprint. Every afternoon, I ran down the long driveway to get her off the school bus. Back then, it was a regular bus. At night, she’d sing Jesus Loves Me incessantly. She didn’t know all the words and her voice was garbled, but she was saying something out loud and we were thrilled. She really loved that song. When she screamed in the doctor’s office, he tried to calm her down by singing Twinkle Twinkle Little Star. I watched silently and thought that he had no idea. She doesn’t care about the stars, but she knows Jesus loves her. Jesus loves everyone, even if they’re different or can’t talk and maybe still need to be fed like a baby even though they’re seven years old.

When we moved, she didn’t know we were doing it for her. She didn’t know that we were doing it so she would be able to attend a special autism school and learn to communicate, to take care of herself, to be able to look at one of us in the eyes and say I love you. Those were the hard years, the years that we saw so much progress in some areas, and yet so little in others. She can feed herself now but we still need to dress her. She can use flash cards and simple phrases to say what she wants but she won’t tell us what we want so desperately to hear.

Now she has a school aid and rides the short bus home. She loves school and the fifth grade and I sometimes wonder if she knows more than we realize. If she understands the conversations that take place around her and the subtle changes in our moods. Does she empathize with our tears, laugh with our joys, and know that we love her? Sometimes she looks us in the eye and giggles at some mysterious joke; other times, she ignores us, preferring her video to human contact. Patriotic songs sung and signed in American Sign Language. It’s the same movie constantly and every time she laughs and squeals as if she’s hearing Yankee Doodle for the first time.

We’re home. I pull into the driveway and wait for the predictable screaming, but it doesn’t happen. I open the back door and unbuckle my silent sister, coaxing her out of the comfortable seat. We go into the kitchen and I pull out the black box. She pushes it across the table. She is obviously communicating her feelings and I sympathize with her. But I know medical information that she doesn’t and even though she tenses, I pull out a test strip and prick her finger. It’s only a small drop of blood, but it tells me enough information. Your blood sugar is high tonight, sister of mine. It must have been the crackers. I pull out the injection pen and prime it. It’s yellow and blue, with cute stick figures; a needle for children. It’s sad, that diabetes and children have to be even put into the same sentence. I inject her with the life-giving insulin and she responds with a tiny whimper. It’s the most she ever complains, yet we do this process more than three times a day.

She was diagnosed when I was seventeen. Her eyes were getting larger and body getting smaller. She didn’t want anything to eat, but she craved liquids. She got off the bus and tried to drink out of a mud puddle. We gave her a full cup of water, but she dumped all of it but a few drops and after sipping them, handed us the cup to refill. Is it the autism that prohibits her from drinking out of a full cup? She goes in one morning for an examination. Hyperglycemia. She could die, my father says with a solemn voice and serious eyes. She could die and somehow I feel as if it’s my fault. I spend the day in my room, crying and praying. Trying to imagine life without this sister of mine. Repenting for the times I resented her screaming and autistic behaviors.

She didn’t die. Four days later, she came home with a fuller body and new instructions for life; insulin injections several times a day, regular blood checks, a balanced diet. Of course she couldn’t give herself injections, so we became her pancreas. The thought of putting a needle into anyone, particularly my helpless sister, at first filled me with terror. Dear God, we already struggle with her daily care, now we must do this as well?

Now it’s a year later and as I put the cap back onto the needle, I hardly think about what I’m doing. It’s become a, while not necessarily pleasant, tolerable routine. She dimples when she sees that I am putting the instruments away. Let’s go lie down and listen to music and giggle with each other about nothing. It’s what sisters do. I follow her down the hallway into the bedroom, where she jumps onto her bed and waits while I select her favorite CD and put the volume where she likes it. She watches while I pull out my laptop and check Facebook. She sings along with the music. Jesus Loves Me. It’s off-key, but she and Jesus hear nothing but beauty. Happy Thanksgiving Eve, sister of mine. You have given me so much to be thankful for and when I look back at my childhood, I see how you colored the pages of my life story with your innocence and affectionate heart. It makes me smile. You annoy me at least three times every day, sometimes more, but maybe those moments of irritation make the moments of affection so much more wondrous and precious. I think all these things and she listens to music and thinks her own things, and together we simply live and breathe and love.

Song of all Songs

I am desperate for love.
My soul craves affection like a baby craves nourishment.
I am needy.
I am longing.
I am desperate.
I struggle to survive in a dry world.

But then His rain falls onto my heart;
He breathes into me and I am renewed.
I am whole.
I am satisfied.
I am beloved.
I dance to His heartbeat like a woman in love dances with delight.

Then He comes and dances with me.

He says I am beautiful and I know He is holy.
He says my voice is sweet and I know His love is better than wine.
He says I have stolen His heart and I know that I delight in Him.

He is mine and I am His.

I fall to His feet and weep with adoration, and my perfume spreads it’s fragrance. I don’t see condemners because I am captured in His gaze.

And now I am quiet in His love.
His song surrounds me.
He fully rejoices.
I am His.

“Set my heart free, that I may praise Your Name.”
-Psalm 142:7